Newly Diagnosed

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MDK
Posts: 46
Joined: Sun Nov 29, 2015 1:43 pm

Newly Diagnosed

Postby MDK » Sun Nov 29, 2015 2:35 pm

Hello everyone - I am a 56, female and found out I have rectal cancer on November 9th. I had a colonoscopy - had been having intermittent bleeding - and was immediately referred to a Colorectal Surgeon. I am not even sure if they have staged me yet, the tumor is about the size of a quarter according to my surgeon and has not gone beyond the rectum wall. I have had an ultrasound and my CT scan and blood work came back clear. I will have 5 weeks of radiation/chemo, some recovery time and then surgery. The location of the cancer is so close to the anus that I will have a permanent colostomy.

I guess I would like input from those who have been thru this. I have yet to meet with with the oncologist, I should have an appointment next week. Will I be able to work during the radiation/chemo? I know a lot depends on the drugs used. Is there any chance that after the radiation/chemo - the tumor will have shrunk enough to be removed without having a colostomy? I am still very much in shock.
Diagnosed 11/9/2015
Stage III Rectal Cancer
Began Chemoradiation 01/04/2016
Completed Chemoradiation 2/17/16
Local Excision
Developed Rectovaginal Fistula
06/24/16 APR / Flap Repair Fistula
Permanent Colostomy
09/20/2016 Liver Mets, possible Lung Mets
9/16 - 11/17 Xeloda and Avastin to progression
12/17 - 01/18 Folfox 6 sessions liver tumor shrank considerably - severe allergic reaction
01/18 - 04/18 Xeloda and Avastin - Progression
06/18 Avastin and Irinotecan

Philippians 4:6-7

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Kick'nAssCancer'sAss
Posts: 248
Joined: Tue Feb 25, 2014 4:38 pm

Re: Newly Diagnosed

Postby Kick'nAssCancer'sAss » Sun Nov 29, 2015 3:33 pm

Sorry for your dx. When I read your post it sounded a lot like my situation. My tumour was a T3 after MRI confirmation. My tumour was about the size of a tennis ball that had not perforated the colon wall also. So a lot bigger than yours. I went through the chem/rad also for five weeks on the hope that the tumour would shrink so that removal would be much easier. That was my surgeons hope....shrinkage. At the end of the chemo/rad he never even tested how much the tumour had shrunk if any. He was removing it regardless. Surprise #1 after surgery I got a complete response from pathology, There was NO tumour left...just scar tissue. This happens in about 15% CRC patients with rectal cancer. My surgeon was also preparing me for a permanent bag since my tumour was also very very low. Surprise #2. he was able to connect everything and the bag was only temporary ( six months). You might want to get a second opinion about the lifelong bag surgeons can do amazing things with what little you have remaining these days. Take one day at a time lots of great people on this board will help you. It will get better and stay POSITIVE.
53M Dx RC Halloween 2013
CT & BONE scan
MRI/T3N0M0 1 suspicious LN
5 wks chemo/rad
LAR open TME Feb 26/14
temp bag
0/24 nodes pCR/pathological
Folfox (8) Mar 28-Jul 4 /14
Aug/14 clear CT scan
Aug 27/14 reversal
Feb/15 clear scope
July/15 Feb/16 Feb/17 Feb/18 clear CT scans
Feb/18 clear scope
Sept 19 clear CT scan & DISCHARGED :P
Mar/23 clear scope
CEA 1.6 @ dx
1.6,1.4,1.7,2.4,2.9, 2.7 2.3 2.5 2.2 2.1 2.5 2.6 2.7
2.7 Sept 19
0-4 normal
https://kickingasscancersass.blogspot.com/

weisssoccermom
Posts: 5988
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Newly Diagnosed

Postby weisssoccermom » Sun Nov 29, 2015 3:48 pm

I also had a tumor which all the surgeons felt was very close to the anus but in reality wasn't. My tumor started a little higher up and grew downwards so that it 'appeared' to be a very low tumor. I'm not saying that that is the case with your tumor....only that it is a possibility.
Next, please make 100% certain that your surgeon (you have time here on this....don't fret about it right this minute) is a BOARD CERTIFIED colorectal surgeon, particularly if you are dealing with a low tumor. Too often, general surgeons, who are quite capable of doing the surgery, will tell you that they are colorectal surgeons. Please just take the time to verify that your surgeon is board certified in COLON and RECTAL surgery....and not just general surgeons. Below is the link to verify a surgeon.

http://www.abcrs.org/verify-a-physician-2/

Finally, I was told by one surgeon that I had an 80% chance of having a permanent colostomy, another surgeon gave me an 50-50% chance and I just wasn't willing to accept that....particularly when I was flat out told (and I understand the reasoning....didn't make it any easier though) that I wouldn't know what was going to happen until after I got out of surgery. In my case, I also had a 100% complete pathological response to chemoradiation (not the same as complete clinical response...close but not the same) which was an added benefit. I opted out of the LAR surgery (standard of care) and instead opted for the transanal excision surgery. It isn't for everyone and many surgeons aren't for it. It requires a ton of followup (more than with the LAR surgery) but I am so happy that I went that route.

As for can you work during chemoradiation....you should be able to but everyone handles the treatments differently. I will also tell you that, IMO, radiation oncologists tend to omit many of the potential side effects and particularly tend to omit those that affect the female population. I was aware of them prior to starting my treatment and did everything in my power to avoid/minimize them which I did. The alternative of trying to 'fix' the problem months or even a year+ later isn't a viable option, IMO. Don't let the rad oncs poo poo (no pun intended) any of your questions/concerns about vaginal scarring, vaginal stenosis, side effects (burning, etc.) and particularly don't accept the line that IF side effects happen they will deal with them then. WRONG!

I might also suggest that you speak with your medical oncologist (the one who will Rx the chemo) about taking the pill form during chemoradiation....a drug called Xeloda. It is now considered 'standard of care' and, IMO, is much better for the 5.5 weeks of chemoradiation than the pump 24/7. Unless you absolutely know that you won't remember to take the pills twice daily and/or you have an issue with swallowing pills (they are big), push for it. Studies all show no difference in efficacy between the pump and Xeloda and not being tethered to a pump 24/7 (or in some cases 24/5) is so much better for the duration of your treatments. Know your options and push for what is best for you.
Jaynee
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

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chemo sabe
Posts: 444
Joined: Fri Mar 09, 2012 9:01 pm

Re: Newly Diagnosed

Postby chemo sabe » Sun Nov 29, 2015 6:10 pm

Hi MDK, sorry you have joined. I had rectal cancer and the treatment you are describing is standard of care for treating R/C in the United States. They are able to do the radiation prior to surgery because there are is nothing else in danger of frying down there. The usual chemo given during this time is called Xeloda - it is a pill. The dosage is based on your physical weight. Same thing with the radiation. The dosage is based on how much power will be required to penetrate your body and bones and get to the tumor. The bigger you are, the higher the power is going to be and the greater the chances of burning your buns. The power requirement is calculated by a physicist, not your radiologist. you get radiation Mon - Fri and take the xeloda on those days. Sat, Sun and any holidays like Christmas are off days. No radiation, no chemo.

I worked every day during my pre-op chemo radiation. Most folks do. I also worked every day of the 6 months of post-op chemo I had to do (except infusion days). Xeloda is not without side effects and can literally take the skin off your hands and feet. You need to use lots of lotion. Other than that, there is fatigue and just a general feeling of blah. Post surgery I never felt much better than crappy but it did not stop my life. I still did everything I wanted.

For sure, you will have a temporary ileostomy. The radiation will make the rectal tissue very mushy and it will take time for the resection to be healed up. My surgeon also told me that he would not know for sure about the permanent bag until he was actually operating. They have to get something called "clear margins" on either side of the tumor. This controls how much tissue needs to be cut out. Remember that more than a few patients do not handle the reconnect or takedown very well. Post ileostomy takedown poses its own problems and some folks never regain control. When I am out of town, I still bring bed protectors with me. I never know what might happen with different food. Is your surgeon "colo-rectal certified"? the surgery is going to be required but you can get a second opinion regarding "the bag". Be honest with your current surgeon. Tell him/her that you want to avoid a permanent bag. Ask how close your tumor is and how far away it needs to be.

I was in shock for a long time. I wasted many hours on the internet (Dr. Google) trying to find out my chances of getting clear of this. The fact is there is no way to know. I wish you the very best outcome. Regards, Gary
64 year old male
Diagnosed Stage 3 Rectal Cancer - T3N1M0 - Oct 2011
28 radiation treatments with xeloda
Colon resection with ileostomy Feb 2012
8 Rounds of Xelox completed Sept 2012
Ileostomy reversal surgery Oct 2012
Incisional Hernia Repair Nov 2013

Lydia666
Posts: 676
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: Newly Diagnosed

Postby Lydia666 » Sun Nov 29, 2015 6:22 pm

MDK wrote:Hello everyone - I am a 56, female and found out I have rectal cancer on November 9th. I had a colonoscopy - had been having intermittent bleeding - and was immediately referred to a Colorectal Surgeon. I am not even sure if they have staged me yet, the tumor is about the size of a quarter according to my surgeon and has not gone beyond the rectum wall. I have had an ultrasound and my CT scan and blood work came back clear. I will have 5 weeks of radiation/chemo, some recovery time and then surgery. The location of the cancer is so close to the anus that I will have a permanent colostomy.


I guess I would like input from those who have been thru this. I have yet to meet with with the oncologist, I should have an appointment next week. Will I be able to work during the radiation/chemo? I know a lot depends on the drugs used. Is there any chance that after the radiation/chemo - the tumor will have shrunk enough to be removed without having a colostomy? I am still very much in shock.


There are good chances you can work during the chemo/rad weeks. I was very functional, occasionally tired but nothing extreme. The inconvenient is you have to go everyday for radiation so that might interfere with your work.

All the best to you!
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
August 2016- DCIS and decided post prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Dec 20 - 2 round of folfox
Mom to 4 & 7 yrs kids - at least i brought them to this level of independence.

MDK
Posts: 46
Joined: Sun Nov 29, 2015 1:43 pm

Re: Newly Diagnosed

Postby MDK » Sun Nov 29, 2015 7:59 pm

Thank you so very much for your responses. So very nice to know that I am not alone. Marianne
Diagnosed 11/9/2015
Stage III Rectal Cancer
Began Chemoradiation 01/04/2016
Completed Chemoradiation 2/17/16
Local Excision
Developed Rectovaginal Fistula
06/24/16 APR / Flap Repair Fistula
Permanent Colostomy
09/20/2016 Liver Mets, possible Lung Mets
9/16 - 11/17 Xeloda and Avastin to progression
12/17 - 01/18 Folfox 6 sessions liver tumor shrank considerably - severe allergic reaction
01/18 - 04/18 Xeloda and Avastin - Progression
06/18 Avastin and Irinotecan

Philippians 4:6-7

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teacher49
Posts: 189
Joined: Sun Aug 14, 2011 10:34 am

Re: Newly Diagnosed

Postby teacher49 » Sun Nov 29, 2015 10:48 pm

Marianne,

I was 61 when I was diagnosed after a few months of noticeable rectal bleeding. My tumor was 4cm and was ultra low, sitting right above the anal verge. My surgeon told me 70% chance he would need to do APR but he would certainly wait to see the response to 5 wks prechemo/rad treatment. He then wanted to wait 10 wks for surgery.

The 5 wks chemorad was not bad. Just make sure that you have the resources to deal with the dehydration/constipation issues on chemo week and then diarrhea on the off week. Towards the end of rad tx, you will need to deal with butt burn. I have to tell you that I had to have a prescription for hydrocodone pain meds to take at the very end....every time I had a BM. Combo of chemo and rad really burned coming out. Taking just one pain pill, I knew that the pain would subside within 15 min. Also supplies of calmoseptine, aquaphor, etc.

Other than that, the 5 wks tx was not bad. I worked full time through-out. Had my chemo infusion pump in a fanny pack.
You'll be fine....just ask lots of questions. Also ask about what you can do to prevent vaginal stenosis/narrowing due to chemo. You'll find that while sex is the last thing on your mind......you don't want it to be painful later on when you are done with all your treatment.

Just before scheduling surgery, my CRC Specialist surgeon asked me what I wanted. If I wanted him to preserve my function no matter what he found and I told him that I just wanted to still be around 5 years from then. He said he would make the decision once he was in. I ended up with perm colostomy. The cancer cells were too close to the levator muscle and in order to have clear margins he'd have to cut into the muscle. He said I might need diapers the rest of my life.

So be it. I'm fine with colostomy. And I am still working full time at least for another year or so.

Hoping for the best outcome for you.
F, 62,CRC, Adenoca, mod diff
cT3N0M0 Stage IIA May 2011
chemorad
APR on 9/27/11 Margins & Nodes Neg
comp.after surg/2 pelvic abscesses/Sepsis/Hosp 40 days
10th FOLFOX 6/6/2012 feet went numb
5FU to finish
NED 8/11/2021

Teddi
Posts: 241
Joined: Thu Jul 31, 2014 1:44 pm
Facebook Username: teddimcfarland

Re: Newly Diagnosed

Postby Teddi » Mon Nov 30, 2015 1:46 am

Hi,
I had a very low rectal tumor. The surgeon at the HMO said APR, permanent colostomy, no other option. Board certified colorectal surgeon at NCI center said 80% chance of LAR and reconnect. Third opinion is very accomplished surgeon and said "no problem". I changed order of treatment and switched insurance in order to see Dr. Number 3. Reversal has been mostly successful, and I have no regrets. So glad I got more than one opinion. Skill sets differ, and you really want the best surgeon you can find for this procedure. Taking a little extra time can pay off. Everything seems so rushed in the beginning, but take enough time to be certain you are getting the best possible treatment for your situation.

Teddi
47 at diagnosis
Colonoscopy, biopsy, CT, PET 6/14
Rectal cancer (tentatively) Stage III-b, MSS
Xeloda and radiation 25x finished 8/14
FOLFOX 5 cycles
Surgery 1/23/14 ~ T1N0MX ~ temp illeostomy
FOLFOX 3 cycles = total of 8
Illeostomy reversal 4/8/15
Clean scans x2, clear colonoscopy 9/15

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O Stoma Mia
Posts: 1709
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation. Off-line for now.

Rectal cancer treatment options

Postby O Stoma Mia » Mon Nov 30, 2015 9:00 am

With rectal cancer, the stage and location of the tumor/polyp are very important and ultimately determine the treatment plan.

The rectum is about 15 cm long and can be divided roughly into three equal parts: low-rectum, mid-rectum, and upper-rectum. It is very important to know exactly where the tumor is located. The surgeon will have to remove the tumor/polyp and leave at least 2cm of clear margin below it. If the tumor/polyp is already very close to the sphincter,then this poses a problem for a sphincter saving operation (SSO).

It is very important to line up the best board-certified rectal surgeon that you can find, because you will want to have a surgeon who has had a lot of experience with successful sphincter-saving operations.

The main options for treatment are shown below, and depend on the T value (tumor invasion level), the stage, and the location of the tumor within the rectum. The decision process is a bit complicated, so you need to have a very experienced rectal cancer surgeon who can properly evaluate all of the available options and choose the best option for you.

Image

FIGURE 30-3. Treatment options for rectal cancer depending on stage and location.
Reference: The ASCRS Textbook of Colon and Rectal Surgery: Second Edition, 2011, Surgical Treatment of Rectal Cancer, Chapter 30. p. 421

Treatment options for rectal cancer depending on stage and location
  • Stage I (T1N0, T2N0—The cancer is confined to the rectal wall and no nodes are involved)
    Distal rectal cancers: T1 (invasion into the submucosa only)
      ■ Local excision
      ■ Radical resection, often an APR
      ■ Adjuvant therapy is usually not recommended.
    Distal rectal cancers: T2 (invasion into the muscularis propria)
      ■ Local excision with preoperative or postoperative adjuvant therapy
      ■ Radical resection without adjuvant therapy, often an APR
    Mid rectal cancer: T1
      ■ TEM
      ■ Radical resection, usually an LAR with low anastomosis. A temporary proximal diverting ostomy is often required.
      ■ Adjuvant therapy is usually not recommended.
    Mid rectal cancer: T2
      ■ TEM with either preoperative or postoperative adjuvant therapy
      ■ Radical resection similar to a T1 cancer
      ■ Adjuvant therapy is not recommended if a radical resection is performed but is recommended after a TEM resection.
    ● Upper rectal cancers: T1 and T2
      ■ LAR

  • Stage II and Stage III cancers [Stage II cancers have invasion into the mesorectal fat (T3) but no involved mesorectal lymph nodes. Stage III cancers are any rectal cancer (T1, T2, or T3) but with involved lymph nodes.]

    ● Distal rectal cancers
      ■ Preoperative adjuvant therapy is most often recommended followed by a radical resection, usually an APR.
      ■ If preoperative imaging does not clearly define the stage of the cancer, resection can be done first followed by postoperative adjuvant
      therapy.
    ● Mid rectal cancers
      ■ Same as above for distal rectal cancers except an LAR is usually performed instead of an APR.
    ● Upper rectal cancers
      ■ LAR, with either preoperative or postoperative adjuvant therapy
  • Stage IV cancers
    ● Treatment for any cancer is dependent on the extent of metastasis. With better surgical and medical treatments for metastatic disease,
    locoregional control of the primary should be aggressive and similar to the above recommendations except in the most advanced cases.

    (Key: LE, local excision; short XRT, short-course radiation therapy given 2 times a day for 5 days in larger fractions; ChXRT, long-course
    therapy given in 30 smaller fractions over 6 weeks in combination with chemotherapy)
Reference: http://www.springer.com/cda/content/document/cda_downloaddocument/9780387248462-c30.pdf

PainInTheAss
Posts: 673
Joined: Tue Jul 02, 2013 3:08 am

Re: Newly Diagnosed

Postby PainInTheAss » Mon Nov 30, 2015 4:10 pm

All I can say is that this is scary, life changing, surreal and you will be so glad when treatment is finished and you start feeling like your old self, only a kind of a war torn, beaten up version. The biggest thing I found that helped me is to believe you will be cured. It is very depressing to constantly worry the cancer will come back and you might die. Once I decided to believe I would be cured, I could enjoy each day and look to the future. I decided I would rather be wrong than miserable, so right now I'm am living my life as though I will be cured and around for another 40 years. It is quite liberating. After my last clear scan, it is even easier to believe, but at first it was more a decision of the will. I consciously blocked out worrisome thoughts with, "No, I'm going to be cured."

I have a permanent colostomy and sometimes I hate it, but most of the time I don't even think about it.

Welcome to the forum. This is a great place to interact with people who "get" what you're going through. People who haven't had cancer really don't "get" it no matter how you explain it. My kids prefer that I don't talk about it. They don't like thinking about it and the less they hear, the better. I love this forum because nobody gets mad at me for talking about cancer!
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

MDK
Posts: 46
Joined: Sun Nov 29, 2015 1:43 pm

Re: Newly Diagnosed

Postby MDK » Mon Nov 30, 2015 5:31 pm

Thanks everyone, this has been a tough day. Surreal is exactly how this feels. I was off last week and this week back at work. It is hard to concentrate.

My doctor is a board certified colon and rectal surgeon and I live in a city with a premier cancer hospital - very glad for that. Thank you O Stoma Mia (love the name) for the info, Teddi, I was given no other option either. I will have to have a second opinion. Teacher49 - when we meet, I will hug you.
Diagnosed 11/9/2015
Stage III Rectal Cancer
Began Chemoradiation 01/04/2016
Completed Chemoradiation 2/17/16
Local Excision
Developed Rectovaginal Fistula
06/24/16 APR / Flap Repair Fistula
Permanent Colostomy
09/20/2016 Liver Mets, possible Lung Mets
9/16 - 11/17 Xeloda and Avastin to progression
12/17 - 01/18 Folfox 6 sessions liver tumor shrank considerably - severe allergic reaction
01/18 - 04/18 Xeloda and Avastin - Progression
06/18 Avastin and Irinotecan

Philippians 4:6-7


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